Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

In the Aids is a...Thread, I got soundly rebuked by treatment experienced folk who didn't appreciate my commentary, largely because I was offering a view that HIV is being viewed as a Manageable Condition because effective treatment exists.

Of course i qualified my views carefully, understanding that not all can fit into that box, that there are limitations to ones experience with treatment, that there are factors that are not equal between ourselves as the HIV community. That Manageability akin to Diabetes, which is what my doctors are stating to me, is the current medical view of managing HIV the disease.

But what interested me most in the rebuke is a line of commentary that why would pre med folks even be reading and participating in these forums?

First, I would offer this from the welcome page of the forum.

Welcome to the AIDSmeds/POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.

Second, I offer my reason for reading and participating in these forums,

I think I can help others like me, adjust to living with HIV prior to meds, to understand what supplement options may be of use for HIV side effects, and to ease the path to medical treatment when it is time.

Having read these forums in the past and having to leave this world behind while I was adjusting because so many folk participating on these forums paint a really dark picture of life with HIV/Aids. Every time I'd drop in, well, lets say it wasn't good for my mental health. But times change, and my ability to adjust to being HIV positive puts me in a position to participate in these forums.

The overriding view I'm trying to provide is to those who are in a similar position as myself, worried about what is to come, but not yet needing the meds to suppress the virus. That the overall negativity towards treatment that some have should not be projected to us all without some balance.

For example, when last i spoke to my specialist about Reyataz, he shared that he has many folks on it who are doing well on that program. I asked him about yellowing skin. He did state that only one case of yellow skin occurred in his practice, and that person is staying with Reyataz because it is working. He also shared that in reality about 2% of folks can't tolerate Sustiva.

Well, looking at things that way, it may not be the worse thing ever to deal with taking medications, and perhaps i don't need to be so in fear of going on meds. Because if you use this forum for information you can see there is an overriding tension on these pages regarding treatment. While folks having issues should by all means share their experiences, we don't get much of a balanced view because folks doing well on treatment just aren't as inclined to offer positive feedback on the experience.

If this forum is as stated an open one, I would think that we can make room for that diversity. But I really think that there is an underlying resentment towards folks like myself by some treatment experienced people who are like war veterans and would like this forum to be like a VFW.

So if that is the case, I'd like to get that out in the open. Its good to know where you stand with your peers, even if you not considered one.

Iím now referred to as a Long-Term Non-Progressor, and Iíve never taken antiretrovirals and I may not ever have to. I was welcomed to the Forums by one of the most respected members. Iíve met many people here, have developed lifelong friendships, and have had the pleasure of meeting probably 70+ members in person.

Everyone recognizes that Iím in the same boat as they are, and that is HIV+. Just because Iím ďmostlyĒ asymptomatic, it doesnít mean I havenít lost many friends to this disease, or that I donít have bad days, or that Iíve never shit the bed since diagnosis.

I came here with respect for all my brothers and sisters in this journey, and theyíve given it back tenfold.

I believe that the rift between ďnewbiesĒ and ďold-timersĒ is perceived by those who want to believe it, or those who are very stubborn. Stubbornness in itself is not a bad thing, it simply must be managed.

What Iím trying to say is that when Iíve been confrontational, itís been in response to someone trying to include me in their generalizations, or calling people names. These forums have become an important part of my life, and coincidentally, since Iíve joined, my life situation has improved. I canít prove it, but I believe thatís happened because of the love and support Iíve found here. It doesnít matter to them if Iíve gone through decades-long toxic chemotherapy or not; Iím part of this group because I share the common goal:

Against his better judgment Matty the Damned will offer his opinion on some of what you say.

Its good to know where you stand with your peers, even if you not considered one.

To be brutally honest I don't see you as a peer because you come across as a nothing more than a shill for the New York Buyers Club. A noble outfit I'm sure, but all your posts seem be about is drumming up business for a vitamin concern.

Frankly whenever I see a post by you, I think "more junk mail from our resident sales rep for the NYBC".

Sorry if I didn't setup this thread correctly. It was intended to for others in my pre med status to also comment and well as post med folks. I did of course offer why I am participating in these forums.

As to my endless shilling for NYBC, I apologize for working that issue to death. I am in no way a sales person for them, not that they have sales people. I trust them because they are a 501 C non profit and are designed to help POZ folks with information about and supplies off supplements. I am only a customer.

Ultimately I'm putting this thread here because I comment on stuff that some consider it off limits because I'm pre med. And to a question regarding to why pre med folks are hear reading and writing stuff anyways.

Only one person made the comment, (that pre-med folks have no right to participate in that discussion you started), and it was immediately rebuked by several forum members as well as a moderator. I think their comments says more about the forum than the comment from that member. To suggest that the entire forum must be tainted by an offhanded remark from ONE member is unfair.

I've been here for 4+ years now and have never seen anyone, (other than the one comment you mention above), say that people who are premed have no right to this forum or to participate in that discussion. I think you should consider it an isolated incident.

I was a 'pre med folk' a year ago. That changed the week after Thanksgiving, 2006. I ended up in the hospital with a nasty case of (fairly advanced) PCP. On the second of my 8-day stay, I started Viread, Emtriva, and Sustiva (the hospital didn't carry combinations of Truvada or Atripla). The support I received pre-meds and after starting never changed... nor did my attitude about HIV, or AIDS as I was diagnosed at that point. For me, I knew it was only a matter of time 'til I had to start meds. Most of us here will eventually start meds too, 'cept maybe some lucky folks like Basquo (why couldn't I have been a LTNP too?).

The point is we're on the same journey here. Some of us will face more obstacles along the way, more pain, and possibly different destinations, if some other unrelated disease or accident ends our journey. Some will have a more uneventful trip while others' experiences will be horrible. It's really hard (impossible?) to predict how one's own journey will go, or how quickly we'll arrive at the destination. There's not a lot to be gained, to me, by looking at this journey as anything other than some stumbling points along the way... some will be worse than others, while other obstacles will be fairly easy to pass. There's really no point in criticizing anybody's 'progress' - whether they're new or old, early or late - on this journey. One never knows where one will be the next day, so all we can really do is attempt to help each other and, as in the link Hal posted, get back on the dance floor.

risered, I must pretty much disagree with most all that you have said. I was diagnosed 18 months ago and started meds immediately (CD4 179) and came to the forums about a year ago. I found them to be most welcoming and learned a great deal. Shortly after joining I began a thread about "What's the Big Deal about Meds", because for me they were truly no big deal. I had read so many posts from people like yourself who had not started meds and were really scared of what would happen. I wasn't suffering side effects and they were most successful. Needless to say I got plenty of feed back. Even had a little tiff with a long time member who has been positive for 20+ years.I am very grateful for thatnegative feedback and for the little tiff because I learned a great deal. HIV effects each of us in a variety of different ways. Some people, like myself respond perfectly to meds and others with the same exact regimen can't tolerate it or it does not work. It's just the luck of the draw. I am grateful that things have worked out well for me. But I fully understand that next month or next year or in several years all hell will break lose.

I don't think the differnce that you speak of has anything to do with pre-med or post-me. The big thing that affects one's view of this virus, in my opinion is pre-HARRT/post-HARRT and how well one responds to meds. I also realized that those who were diagnosed before HARRT, have a completely different experience than I we can't compare the two experiences or try to decide who has it worse or betterThat is such a waste of time. We should concentrate our energies on sharing, supporting, civil disagreements and action.

If this forum is as stated an open one, I would think that we can make room for that diversity. But I really think that there is an underlying resentment towards folks like myself by some treatment experienced people who are like war veterans and would like this forum to be like a VFW.

It is my hope that you will be able to gain from your experiences here and really come to appreciate all that these forums have to offer, both newbies and oldies.

Woods

edited for word choice correction

« Last Edit: November 10, 2007, 02:56:01 PM by woodshere »

Logged

"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

Further I'd say that was that posters opinion, but it doesn't mean it's everyone's. I respect his opinion, but I don't agree with it. Just because someone has an opinion on issues ranging from meds or what the future holds or etc., doesn't mean it's fact or the masses agree. They may. They may not.

I've been on meds 8 years and have heard countless predictions and tales. Some have been accurate, many others have not. Ultimately I take my guidance from my doctor, which is my choice, but I'm open to hearing from others and to be persuaded - as long as it's a respectful, informed dialogue and I'm viewed as an equal partner. I say just be your honest self, not what some others may want you to be.

Good luck,Mike

Logged

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Ultimately it comes down to one simple fact. Everyone who comes to these forums comes for support because they or someone they know is affected by HIV. I've been a member here for only 3 days less than a certain ignored member of this thread and I've watched time and again how some new people are driven from the forums here by certain very vocal members who have taken it upon themselves to be the purveyor's of what is right and true regarding HIV. I've also seen some very honest heartfelt and helpful support.

Don't let the overly vocal negative attitudes silence you or the truth you have to share with your own experiences with living with HIV. Our good health requires good nutrition as well as good medicine and anyone who would deny you the right to share good information does us all a disservice!

I've been a member here for only 3 days less than a certain ignored member of this thread and I've watched time and again how some new people are driven from the forums here by certain very vocal members who have taken it upon themselves to be the purveyor's of what is right and true regarding HIV.

In my humble opinion this is the problem. If you have a certain member on ignore then how in the world do you know what they are doing? If you truly intended to ignore someone then why bring it up? I've watched time and time again many people welcomed to the forum and unfortunately as infections increase I don't see that changing anytime soon.

They participate because, as some have stated, we are all on the same journey.The difference is, some of us are travelling first class, and some of us are gasping for air in the baggage compartment. Some are gliding along in a sleek new Mercedes, and some of us are chugging at a snail's pace in a beat up old 1971 Dodge Dart with 4 bad tires and no spare.

Your reality changes your perceptions, that is the way life works. Of course those of us who have taken these meds for 15 to 20 years will think differently about the "manageability" of HIV disease that someone who is beginning to consider starting Atripla.

Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Just because someone is on ignore now, doesn't mean they were always in that position. I made my point about my length of membership on the forums to let it be known that I've been around much longer than people have given me credit for recently and I've seen my share of behaviors here, both good and bad. Judging from what I saw before I used the ignore feature I'm fairly certain I didn't need to see the reply in this thread to know it was antagonistic to the original poster. I choose to use the ignore feature because it keeps me from seeing personal attacks and baiting aimed at myself. That's how I've survived here for over a year with no time outs or warnings against my account.

Just because someone is on ignore now, doesn't mean they were always in that position. I made my point about my length of membership on the forums to let it be known that I've been around much longer than people have given me credit for recently and I've seen my share of behaviors here, both good and bad. Judging from what I saw before I used the ignore feature I'm fairly certain I didn't need to see the reply in this thread to know it was antagonistic to the original poster. I choose to use the ignore feature because it keeps me from seeing personal attacks and baiting aimed at myself. That's how I've survived here for over a year with no time outs or warnings against my account.

dude what any of this has to do with this thread is beyond me but sooner or later you will be a very lonely forum of one.

edited to add: despite your many protestations and the curious nature of your posts and private messages, from where I'm sitting you seem to have no problem trying to stir things up.

Judging from what I saw before I used the ignore feature I'm fairly certain I didn't need to see the reply in this thread to know it was antagonistic to the original poster. I choose to use the ignore feature because it keeps me from seeing personal attacks and baiting aimed at myself. That's how I've survived here for over a year with no time outs or warnings against my account.

I'm sorry but this just doesn't make any sense. You can comment and make judgements about others without even knowing what was said? You can mention you have people on ignore to get your point across about how bad someone is and yet you admit you don't even know what was said but you still choose to post about it? With this type of reasoning you are bound to post out of context to the topic. Sense you seem to have psychic powers when it comes to posting wouldn't it be better not to post in a thread where you assume people you choose to put on ignore are posting? This is weird logic to me.

Judging from what I saw before I used the ignore feature I'm fairly certain I didn't need to see the reply in this thread to know it was antagonistic to the original poster.

See...there's the thing, though. From several of the threads you've had skirmishes in lately, one thing remained constant: you '"didn't feel the need to"...read previous posts/threads/histories, etc before leaping in to make sweeping statements and give all of us a good "what for" about how it is here at AIDS Meds. I'll be happy to provide links backing up this statement of mine if necessary.

But what am I thinking? I may as well just say, "Jump down, turn around, pick a bail of cotton" since I think I may also already on ignore and you may not be seeing any of this I've just posted.

They participate because, as some have stated, we are all on the same journey.The difference is, some of us are travelling first class, and some of us are gasping for air in the baggage compartment. Some are gliding along in a sleek new Mercedes, and some of us are chugging at a snail's pace in a beat up old 1971 Dodge Dart with 4 bad tires and no spare.

Your reality changes your perceptions, that is the way life works. Of course those of us who have taken these meds for 15 to 20 years will think differently about the "manageability" of HIV disease that someone who is beginning to consider starting Atripla.

Alan

I couldn't have said it better, Alan. Being that I am one of those who just started the Atripla train ride, I can understand and respect those who have been on meds for 15-20+ years. I can only hope that Atripla/Ziagen will work for me that long. It does sadden me that people are struggling the way they are with this virus. Those of us who are doing good and happens to be managing this virus should consider ourselves blessed because things can change in a blink of an eye.....

I participate to learn, get a reality check, and spill to people like the Queen, Alan, Matty, Dauschund,Bear,etc. I know that I will end up on meds. Basquo is lucky but I look at him as an exception not a rule. I guess I could sit in my ivory tower of good numbers and say "this wont be me" but it will be. I know it will. That isn't pessimistic, that is me being realistic. I hope for a cure knowing it wont happen. I pray for better therapies than my soulmates on here had to go through and they are coming. I take all your stories to heart and love you all for sharing. I come here to feel human. I come here to feel "normal". I come here to share. I come here with love.

I never felt unwelcome or misunderstood by people taking meds on here when I joined the forums. I have seen battles between the newbies and oldies but they all come down to one thing: lack of respect for each other.

HIV is potentially a manageable condition in some countries if you have been infected in the last few years, as far as the VL and CD4 counts go. We do not know what may be the long term side effects of the new treatments, we're just hoping for the best, which may be dying of lung cancer instead of PCP. It is still not a manageable condition is most of the world, and we have lost a cherished member recently, which reminds us that it is not a piece of cake.

People like Philly, RAB, Jeffreyj have had to endure years of pain and suffering to keep themselves alive by sticking needles all over their bodies. Others are wondering if they're going to shit their pants without control or puke their dinner every day. I don't think those experiences are something I would called manageable. As for the psychological aspect, there are people having problems dealing with rejection, unable to find a partner, lack of love, falling into depression, drugs and committing suicide. In the USA there are people trembling every day wondering if they will be able to get the medication that will keep them alive. That's not really something that sounds manageable to me.

In most of the world, there are hundreds of people dying every day of AIDS.

So yes, I don't think I would call this disease a manageable disease, except for very few lucky ones, like you and me, who have access to medication, support, internet access, and live in countries that have resources and competences to make us live longer.

Now it seems that I'm depicting a dark picture of the overall situation, but I don't think I've seen an imbalance of dark and bright in those forums. There are people suffering and others doing very well, both have the right to post their situation and discuss about it.

Sure, you see posts that tell you to enjoy life until you go on meds because it's going to be hell, you're going to suffer side effects, puke every day, you will get lipo, neuropathy and other difficult times. When you read those posts, read the poster's history, and you will see that for most, they DID go to hell, and when you reach hell it's hard to not be harsh against people that try to make it look like it's going to be an easy walk. Others, mostly those that have had access to the new type of drugs available in the last 4 years are posting very positive posts, their numbers are excellent or going in the right direction faster than ever, and they are not experiencing any side effects.

I have enjoyed your posts about the vitamins, what their potentials can be, how to get them at a cheap price, but personally, after taking 28 pills a day for 6 months with no expected outcome, I'm really thinking I'd rather go on meds sooner than later, risk side effects but fight that disease as much as I can with stuff I know works. Now from your posts I learned a lot about some vitamins and I will keep taking some of them for the overall known benefits for my body.

Respect is, I think, what will make you step back, read the posts, and understand them. Ask questions, don't deny the possible outcomes, your walk in life with HIV will be easier if you happen to be hit by a difficult time.

See...there's the thing, though. From several of the threads you've had skirmishes in lately, one thing remained constant: you '"didn't feel the need to"...read previous posts/threads/histories, etc before leaping in to make sweeping statements and give all of us a good "what for" about how it is here at AIDS Meds. I'll be happy to provide links backing up this statement of mine if necessary.

But what am I thinking? I may as well just say, "Jump down, turn around, pick a bail of cotton" since I think I may also already on ignore and you may not be seeing any of this I've just posted.

Hate to break it to you, Thunter Bunny but you are on his ignore list along with me. That's his choice to use the ignore button. I posted in his thread simply because someone may be feeling the same way I do. It helps to know that you are not alone when it comes to thoughts...You know great minds and all that jazz.

Having read these forums in the past and having to leave this world behind while I was adjusting because so many folk participating on these forums paint a really dark picture of life with HIV/Aids. Every time I'd drop in, well, lets say it wasn't good for my mental health. But times change, and my ability to adjust to being HIV positive puts me in a position to participate in these forums.

Thank you for stating that...as I went into hiatus for several years from this website due to this fact. Even now, coming back on, i am concerned, once again, for my mental health...but I'm trying to see past all the negativity, and instead, focus on the community, as well as issues that bring us all together.

I came to these sites, I believe just earlier this year, and I've never had a problem with anyone except one person who was permanently banned because he was a troll. I love the people here and the support they give and advice.

I'm not a "supplement" person because they are not regulated by the FDA and I know at certain levels, things can be dangerous. People's opinions are always welcome. I don't use the "ignore" button, nor have I ever felt the need to use it. How could I get what everyone was saying if I did that? That's just a threat to me and I really don't appreciate that. (Not that it was focused on me personally, just don't like those kinds of things).

Another thing I remember is that everyone is different. So there will be mixed emotions and opinions from time to time. That's just life. Grow up. I love this site and I've met (online) several people on here that I pm with. But, everyone has to decide for themselves I suppose.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

After I put in my last post on this thread, I was actually dreading coming back to read the follow up postings.

I can only say that it is hard from time to time to share a what has been a very difficult series of responses from my commentary from my Aids is... posting.

After I PM'd RapidRod explaining my position, RR essentially told me that it won't be long before I would be offended by my own posting. Rod was apparently really very angry with what i wrote and actually and seriously offended.

And when leatherman questioned why a pre med person even participates in these forums and essentially has nothing to offer the post med survivors I really was pained to deal with such vehemence.

I truly appreciate those who supported my right to post an opinion, but lets face it, someone like me, who is pre med, who is working to stay off of meds as long as possible, who is at this time doing ok, is so far ok with being poz, who because I am not experiencing anything really bad yet, is working to have a good mental outlook, to believe in a future with HIV, is looked at somewhat askance by others who "know better".

I support the idea that this is a diverse community and ultimately there is going to be those who agree with my thoughts and those who don't. That really doesn't bother me at all. I'm always up for a good posting discussion. I learn alot from that type of interaction.

I now accept that there is also a level of anger that can explode for what I thought was a relatively benign explanation of why the needle was moving from Aids is a death sentence to the word that sparked some anger to a finger in the eye sound off, "manageable".

After stepping away for a couple of days to think about what happened and dreading to read the responses from my more hastily and what i thought would be more provoking idea, that there is a class differential between pre and post med posters, i now just accept that issues that I think and write about float in a world where Hard Times are far more often the norm than in the day to day NEG world. Probably a big part of me is in denial of that. But then again, being optimistic about the future requires a bit of denial to stay focused on the prize.

If my mechanical and somewhat dry intellectualizing of HIV or my now fully integrated living with HIV self view is just a cover up for fearing what will happen when my HIV advances, and that is reflected in my posting, well i apologize for past transactions regarding what may be considered as a Pollyanna view of HIV and AIDS.

But I do mean this sincerely, I write to try to help others think about living with HIV/AIDS and living as well as one can. I write to help other gain some measure of control of HIV, be it through supplements or through attitude or the now controversial belief that HIV can be a managable disease. I write because I like to help people and I have a history of being able to help others. So when I'm not apparently helping, I really wonder what the hell I'm doing.

I'm not asking for votes of confidence or confirmation that my posts are helpful. (thanks regardless milker!) I am just sharing for me what I thought was a simple idea of being a helpful person isn't really enough to want to be here for me. I came with a mission to this forum to try to say that One can Live with HIV vs One is Doomed to Suffer by HIV. But that is ultimately silly because we all are living and doomed at the same time.

I have been in management in my past, and i learned that you can't change people, but I thought one might be able to change attitudes. I fear that that thought is misplaced as well.

When I sat down to write this response, I did not think it would be my last posting on this forum for a while, but I think I'm going to take a step back and gain some perspective on this turn of events.

I think the problem is that a lot of us don't really know who the fuck you are. I certainly didn't. All I knew is that you were the character who would pop up in threads in gloomy Nutrition and Side Effects forums saying "Well, you know you should take x supplement which is available from the NYBC."

Hence my blunt, but honest response.

Then a few days back you go and jump into some thread in Off Topic (a forum noted for it's robust debate) and get yourself pummeled and now you're wondering why?

Internet forums are funny places, especially ones like this where there is a strong sense of community. We're a parochial lot and don't often cared to be lectured (that's how you came across) by people who haven't really participated in the body proper.

But don't fret. The nifty thing about forums like this one is that there is almost always a way back for everyone. You need to be seen, baby. Not just in the nerdy forums like Nutrition, Side Effects and Research but in Living With and Off Topic.

It doesn't take much to wish someone the best when they get good numbers or to welcome a n00b or to commiserate when one of us has a bad day. But such posts earn you good forums karma.

People remember when others say kind things to them.

I suspect you have a lot offer and I think we'd all benefit from hearing more from you.

Risred I'd agree with some of what Matty said in that it takes some getting used to the culture here by actively engaging and building an understandingof who you are -- especially when starting out.

As far as what you wrote in that thread (and as someone who has been on meds for years), I personally found nothing offensive in terms of looking at the possibilities and a hopeful future. No one can predict you won't. No one can guarantee you will. In my opinion only your journey will unveil what will happen, not anyone else's or their predictions.

My friend just e-mailed this article to me from this Saturday that shows some medical and lay persons perspective on Living with HIV today that is good food for thought -- especially in light of recent conversations you've gotten stressed over. As with anything, some will agree with it, some will not - but it's just another look into the diversity of HIV and how people view it:

Take some time and regroup if you need it and don't get down over this stuff. And don't let yourself get stressed over squabbles here! I've seen countless rough and tumble disagreements on here, and this latest one you got caught up in was mild in comparison. Keep your chin up!

Peace!Mike

« Last Edit: November 13, 2007, 01:06:56 AM by StrongGuy »

Logged

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

I too decided that rather than make the issue worse, I just wouldn't post any replies. Oh, I did have some replies though - some rather lengthy, emotional replies; but as I'm never certain what will provoke people, I thought it best to just let this thread die off. I began to feel better about the whole issue after writing those non-posted replies and getting some of it out of my system anyway. That left me with the whole weekend to consider why my comments had provoked people and why I was upset with their reactions. I think the problem lies in both envy and a lack of compassion. Please allow me a moment to explain these issues, as I see them, using two commonly-used phrases here in the forums.

1) "Life itself is a death sentence"

I think this is an awfully strange way to look at life. Personally, I think that Life is a wondrous thing that should be enjoyed and cherished (as it can be very fleeting); but, sadly, it ends with death. I'm sure someone in Africa, suffering with AIDS, famine, and civil warfare, probably does think that life itself is a death sentence (and I'm not so sure that he would be wrong in that assumption ); however, living in the US, with decent health care and habits, I should be able to live and enjoy my life to a nice old age.

Instead AIDS nearly killed me at 32, 34, 36 and again at 38. (and it DID kill my previous partner when he was only 29) Now at 45, I'm doing better, but I definitely expect HIV/AIDS to be the death of me. As a courier/driver, I was involved in over 20 car accidents (none my fault ), and I've nearly been struck by lightning 3 times (within 15 ft). The odds are in favor of me dying, not from one of those "one in a million" mythical bus hits* (I already beat those odds! LOL), but from a complication of having HIV/AIDS; and for it to happen sooner than expected for the average life expectancy.

Many times when people post their fears about AIDS still being a killer, I think people show a great lack of compassion by responding with "life is a death sentence". Rather than offering comfort to someone having a difficult time dealing with the real effects of this disease, they use this callous comment to rudely brush away all those worries/concerns/fears, as if they weren't important at all. Using these kinds of statements (comparing life to a death sentence or a transitory situation - which it is NOT for most people), denigrates and belittles the problems/sickness/struggles that are affecting people's lives and that will (more than likely) bring an end to their life sooner than the average person not afflicted with this disease. Instead of being offered understanding and support from the other members of an AIDS-related site, the member, worried about side effects or an untimely death by AIDS, is usually rebuked and rebuffed as being "negative" or "pessimistic". Although you may "think" that these worriers are wallowing in self-pity and worst-case scenarios, take a moment to walk in their shoes and you may find out differently. For some of us, this terminal illness really is a life or death situation.

2) "HIV/AIDS is a manageable disease"Risred, I see that you thought the word "manageable" was the problem. I think so too; but I think the problem is actually WHAT is being modified by that adjective. Personally, my thoughts about this are that HIV is manageable; but AIDS is not. (Maybe this is where the problem lies in the conflict between the "newbies" and "LTSes")

There are members here who don't really have many problems. They call their disease "HIV". They say that it is "manageable", and chat about bright futures. Some take only one pill a day with no side effects; while others aren't even on any medications at all because they are still so healthy. They worry about the stigma at work, whether they should sero-date, and when to disclose. They keep tabs on all the latest treatments, just in case things should worsen for them.

Then there are other members here that call their disease "AIDS". Most of them can no longer work, are on disability, and depend on the largesse of the government to keep getting their meds. Many have terrible side effects from both the illness and the meds; but without the meds, viral loads skyrocket and tcells go even lower (as if being in the 200 range wasn't low enough). They know all about "life as a death sentence". They've lost partners and/or dozens of friends. They've been hospitalized, when some OI has pushed them to face up to their own mortality. Disclosure is no problem for them - just look at their sickly appearance or check out their prescriptions. (At this point in the game, every one (from the doctors to clinic workers to the drug store workers to the Human Services case worker) knows I have AIDS - because nearly every month they all participate in helping me treat it.) But somehow these people have managed to hang on, pull through the grief and depression, and find ways to deal with the mental, physical and emotional side effects.

I could try to blame in on the weird mental effects of the Chantix (or because this is DAY EIGHT with ZERO cigarettes and I'm really irritable and jonesing for a smoke), but since I fit into this latter group, I'll take the blame that what I'm feeling whenever I read the word "manageable" is ENVY.

Envy that some of you are lucky to have recently acquired HIV. That means that you don't have to go through losing your partner, being hospitalized, dealing with allergic reactions to the meds, or puking EVERY damn day because the meds are so toxic. At least that's what we all hope it means for you. I remember back in the day when they told me they were sure that AZT would make me better. I remember having to stop taking it. It was actually making me sicker than my dying partner, and one of us had to stay alive and well enough to bury the other one. I also remember how they told me if I'd just take Sustiva a little bit longer that the rash and horrible nightmares would go away. Nine grueling months of nightmares later, when I fell down the staircase one morning still doped up by the Sustiva, I realized that if I didn't stop taking that med, it really was going to be the death of me. All we really know for now is that the meds are more effective with less immediate deleterious side effects. What the result is in 10, 15, or 20 yrs. we can only guess.

Every time someone discusses how "manageable" this disease is (especially those who haven't even begun to "manage" their HIV by taking meds), or brush aside my concerns about a shortened lifespan, I fell they are belittling and denigrating my feelings by rubbing my nose in their good fortune and better health. That's a great way for members of an AIDS support site to support a guy with AIDS, right?

You know what I'd like to see those healthy people doing, now that they've been to this site, found out about how good the meds are, found out when to start the meds, and gotten current on all the latest treatment news? Rather than hang around here and gloat about how healthy they are (that's just my opinion of how it comes off to me), I'd like to see them go out and fight for more funding and less stigma. If no one keeps fighting those issues (and it's oh so much easier to do while your healthy), and funding decreases, and research slows down, when - heaven forbid - all these "current" wonder drugs start failing 20 yrs. from now due to long-term side effects and resistance, then all of those people will end up in a situation similar to mine today.

You sure don't want to live through what I've lived through though. Some of it was pretty bad; though I like to think it made me a stronger person. It's awfully hard to care enough to swallow 38 pills a day, living 600 miles from your family, too sick to hold a job, after having buried your partner of 10 yrs. I've considered every day that I lived past Randy an EXTRA day. I've tried to do whatever it takes to stay alive (swallow the pills, and pray I don't puke for at least an hr to keep some of the meds in me), and tried to eke what enjoyment I could each of those days because that's all I can do to bring some sort of meaning to why he's gone, and I was left behind to deal with this burden for all these long, long years.

I've come to a measure of peace with my life after lowering my expectations about how long it would last and what level I deem as a good quality of life. (To be sadly truthful, any day I don't puke, I actually consider to be a Great Day! When the day comes that the only meds that work, also make me puke every day (as some regimens have already done to me), then I have decided that will be the day I quit the meds, and let what-will-happen happen.)

Until this Summer, I usually just lurked around this site for the last couple of years - mainly keeping abreast of the newer meds coming out as I keep developing resistance to some of these meds that I've been on for a while. I live in a small city in Ohio, and never attended any support group here, as it was nothing but a "meat market". All the people I ever knew around locally that were positive all died years ago. Thankfully, I've had some of the greatest friends in the world for the 20 yrs I've lived here. Helpful and supportive as my friends are though, they just don't understand what it's like being positive with AIDS. I felt like I must be the ONLY poor gay guy left in rural America that had been dealing with AIDS for over 16 yrs. Sadly, I've now met many people in the same boat as me; but I will admit that I'm a bit glad to not be in the boat alone anymore. Knowing that others have survived the same things, and some even worse, gives me courage to keep hanging on.

I think, Ris, that we're just living in two separate worlds, talking two different languages.I really am glad for you and hope that you stay well a long time. When you finally need meds, I hope that they are even better than the ones on the market today. I'm sorry this whole discussion boiled over; but hopefully some people took some time to think about this and maybe something was learned. I hope that I finally learned to just ignore the posts about "AIDS being manageable" (or "newbies vs LSTs"), because they are never happy threads. Everyone goes away at the end a little hurt and a little confused; never satisfied or happy.

I'm going to wander back over to the group discussing medicare pt D, or periph. neurop., or shingles, or how to combat the nausea, or how to deal with losing a partner and let you happy, healthy people mingle together. Oh, if you have the time (while you still do have that good health ), and this is only a suggestion, go and fight for more funding and less stigma, so you really do get that bright future you talk about.

Best wishes and good health to all! mikie(who is really REALLY REALLY jonesing for a cigarette right about now, but instead, is feeling good enough - even though I puked this morning - to take the bike and go ride in the park and enjoy a nice Fall day)

I think this is an awfully strange way to look at life. Personally, I think that Life is a wondrous thing that should be enjoyed and cherished (as it can be very fleeting); but, sadly, it ends with death. I'm sure someone in Africa, suffering with AIDS, famine, and civil warfare, probably does think that life itself is a death sentence (and I'm not so sure that he would be wrong in that assumption ); however, living in the US, with decent health care and habits, I should be able to live and enjoy my life to a nice old age

You seem to have misunderstood my use of that phrase.

It does not mean to live life under some cloud. It means get on with living. The second we are born we start the journey towards death, that's the human condition. None of us really knows when or how it will happen, so why worry about it. So many newly diagnosed get fixated on "will I live a normal lifespan" not "what will I do with that life". There are no guarantees, anyone of us could drop dead of an aneurysm tomorrow.

BTW, I don't think folks posting good numbers here are "gloating". Its sharing part of their HIV story with the group. Are any numbers really "good", in the sense that they all document a struggle that negative people don't have to worry about at all?

Oh, if you have the time (while you still do have that good health ), and this is only a suggestion, go and fight for more funding and less stigma, so you really do get that bright future you talk about.

and with that im gonna take my non-meds hiv self back to bed as im floored by fatigue. grrr! mikie, altho it's nothing compared to what you described in your post, dont be thinking that everything is rosy in all the garden of the new(ish) infected. i for one have what would be considered fairly good numbers and low vl without meds (yet) but can currently barely see for tiredness, have spent the night in pain and nightsweats and so have had to call in sick again despite the likely consequences, and yesterday had another very scary 'senile' moment (altho im in my early 30s, so i hope this is more to do with fatigue mushing my brain than anything else).

but not to bang on about it or anything, but as soon as ive got the energy i'll be back to doing as you suggest,

"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.